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Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

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Depression and Sjogren’s

 

describe the imageQ. Is depression common among Sjögren’s patients?

A. Depression is a mood disorder with symptoms ranging from feelings of excessive sadness, increased irritability, sleeplessness or excessive sleep, fatigue, impaired ability to concentrate, loss of appetite, loss of interest in once-enjoyed activities and loss of sexual drive to feelings of hopelessness and thoughts of suicide. Not all people who feel “depressed” have clinical depression, and not all people with clinical depression feel “depressed.”

Faced with a diagnosis of a chronic disease of unknown cause with an often variable and unpredictable course, patients can react with fear, anxiety and depression. As with many other chronic diseases, Sjögren’s syndrome (SS) patients report feeling depressed more frequently than do healthy individuals in the general population. In one study, 32% of SS patients reported “possible” clinical depression, which was significantly more frequent than in healthy age-matched female controls.

Symptoms of depression such as fatigue, altered sleep, a change in appetite, loss of interest and mood changes can be seen in medical conditions that can also be associated with Sjögren’s. These include anemia, thyroid disease and fibromyalgia syndrome. Treatment of these conditions can correct the symptoms that might otherwise be attributed to “depression.”

Fatigue is very common in patients with SS. Although fatigue is more frequently observed in SS patients with depression than SS patients without depression, most SS patients with fatigue are not depressed. Fatigue, as noted above, can be caused by anemia or thyroid disease but it might also be caused by Sjögren’s itself and as such may respond to treatment of SS.

After medical conditions that can mimic symptoms of depression are ruled out, traditional treatment of depression with support, counseling, psychotherapy and anti-depressant medications is effective in SS patients. If you think you might be depressed, remember that you are not alone and the feelings you are experiencing can be reversed. It is important that you speak with your doctor so that your symptoms can be evaluated and the proper treatment can be prescribed for you.

-Neil I. Stahl, MD
This article was first published in The Moisture Seekers, the SSF monthly member newsletter

Comments

Looking back - I think my initial bout with depression came with my initial flare. It took a few years to identify the depression, another twenty to recognize the Sjogren's!
Posted @ Friday, June 21, 2013 11:20 AM by Brigid Rauch
The connection between Sjogren's and depression is clear. My experiences from childhood, when the symptoms I had were not thought to be serious nor taken seriously, are that with each episode, with each new advance of the disease or the addition of new diseases to the spectrum, depression began to take up more and more of my life. The damage done? Without question life altering, and not for the better. To deny that there is an aspect of any chronic illness or disease that does not owe its deadly strength to depression is absurd. Sadly, depression, like most mental illnesses, is stigmatized and still spoken about in harsh whispers. To battle one disease is a monumental task; to battle the depression that comes along with that disease makes all things daunting. Cures for Sjogren's and Depression? Not in my lifetime.
Posted @ Friday, June 21, 2013 11:23 AM by Jana Pendragon
Thank you the article
Posted @ Friday, June 21, 2013 11:48 AM by Lale
How can you not be depressed when your life has crumbled around you and there is no help. I cannot tolerate alsmost any meds. They all just make me worse as my condition deteriorates and I don't even know this person in my skin. I have constant pain, muscles, peripheral neuropathy, my teeth are going bad, severe hearing loss. huge BP fluctuations, extreme fatigue, severe weight loss, bad headache 24/7. I am ready to just throw in the towel. All that is ever done is treat symptoms, then they try to give you more meds to treat those side effects. Everyone I know with SS just keeps getting worse. It is so much more than dry eyes and dry mouth and why can't friends and fmaily understand that? Sorry to be so negative, but I am very depressed. I've had psychotherapy, antidepressants, accupuncture, biofeedback, neurofeedback, chiropractic, massage and I just get worse and worse more and more rapidly. I have a hard time doing things with family and friends and they seem to just withdraw from me more and more, out of sight out of mind. I have a great family and many long time friends and am used to doing and going. Now I can't wait to take my Ambien and go to bed at night, hoping tomorrow will be a better day. Does anyone have a success story? I'd like to hear it.
Posted @ Friday, June 21, 2013 12:04 PM by Barbara Greenlund
How can you not be depressed when your life has crumbled around you and there is no help. I cannot tolerate alsmost any meds. They all just make me worse as my condition deteriorates and I don't even know this person in my skin. I have constant pain, muscles, peripheral neuropathy, my teeth are going bad, severe hearing loss. huge BP fluctuations, extreme fatigue, severe weight loss, bad headache 24/7. I am ready to just throw in the towel. All that is ever done is treat symptoms, then they try to give you more meds to treat those side effects. Everyone I know with SS just keeps getting worse. It is so much more than dry eyes and dry mouth and why can't friends and fmaily understand that? Sorry to be so negative, but I am very depressed. I've had psychotherapy, antidepressants, accupuncture, biofeedback, neurofeedback, chiropractic, massage and I just get worse and worse more and more rapidly. I have a hard time doing things with family and friends and they seem to just withdraw from me more and more, out of sight out of mind. I have a great family and many long time friends and am used to doing and going. Now I can't wait to take my Ambien and go to bed at night, hoping tomorrow will be a better day. Does anyone have a success story? I'd like to hear it.
Posted @ Friday, June 21, 2013 12:04 PM by Barbara Greenlund
It is what it is. I fight depression most days. Mood swings are miserable. I feel I am in this alone, always was and always will be. I am with a psychologist and reach out to family who are sick of it. Help.
Posted @ Friday, June 21, 2013 12:14 PM by Nancy Kelleher
After reading various blogs, I feel the fellowship building.  
 
Yes, it is an unpleasant and lonely fate; however, we can be a strong network for each other. The optimism is that we understand by going through this at the similar times and ways. Varying degrees of pain, fatigue and discomfort, as well as the obvious depression links us together. 
 
It is OK on this blog to vent our unpleasant symptoms. That helps us all know we are not weird or different. However, we must watch we don't get caught up in a pity-party. 
Be thankful for our fellowship; be thankful for any day that is slightly better than the others and boldly educate folks around you, especially the doctors; they don't seem to get it. 
 
Our friends from the past may fade and pull back; they don't understand. However, we do know how to listen to each other and must continue this network. Thanks to all who participate as it makes it a little easier to bear this burden! 
 
Keep your chins up (ours as I am in this also); and continue the mission of getting through each day, one step at a time with fewest meds as you can; they are not good for us, despite what your doctor says. Friend with SS who tries to look for the positive in each day!!!!! 
Posted @ Friday, June 21, 2013 12:57 PM by Linda
I took Cymbalta for 7 years and did wonderfully, such relief. Then, it turned on me and I developed all of the severe or seldom occurring side effects and life turned into hell. Savella works for some friends, but does nothing for me. Have fallen back into fighting depression, muscle pain, joint pain, severe osteoarthritis, fibrgmyalgia, peripheral neuropathy, muscle weakness and fatigue. I know how you feel when you say no one understands and are tired of hearing of it, especially if I ask for help and they see nothing wrong with me. If they could only understand that some days getting up and getting dressed is a big accomplishment.
Posted @ Friday, June 21, 2013 12:59 PM by Linda B
Nancy, My heart goes out to you. One of my daughters, when I made the comment about how bad one of my friends with SS was said, "Well, maybe you need to find some new friends".!! Am I supposed to not have anything to do with my SS friend?
Posted @ Friday, June 21, 2013 1:01 PM by Barb
It's hard not to sink into depression. Especially when folks start to get critical about how little you do while at the same tim it's eating you up inside that you can't do more. Someone mentioned life crumbling around you and having a lack of help. I really see that in my life too. It's hard getting the point across that this is debilitating. Seriously. And NO I can't just push through and do a little more. If I could it would be done already. What you see is what I'm capable of and it's not much! My husband is pretty good at keeping depression at bay, but when he has to stay home to care for me and our kids and our income suffers drastically because I'm too weak to manage, it really sends me down.I wish that more than a medicine to cure it or a therapy to treat it there was just someone to come do my laundry and vacuuming and share a cuppa and some conversation a few times a week. That would be a cure for my depression and free up energy for more important things like feeding and minding my children.
Posted @ Friday, June 21, 2013 1:05 PM by Mrs. Crary
I have suffered from Major Depression with Anxiety and other Mood Disorders ie...anger, mania, sleep, etc...for many years. Thank goodness mine are managed by medication and frequent Psychiatric appointments to make sure I am staying between the lines so to speak. The fatigue is always there, but I force myself to get up and DO things. You HAVE to push through it especially if you have children. I have a 19 year old daughter who goes to the University of Georgia and works for the Atlanta Braves part time selling tickets, and I have an 11 year old son who is very active. My husband is in the Army. I am a Registered Nurse by trade, but Sjogrens as well as my psychiatric issues have made it impossible for me to work anymore. I cannot take Placquenil, because I am allergic and my rheumatologist refuses to try anything else. So, I have to push through the fatigue, pain, etc... to be there for my family. I do nap, cry, have anxiety attacks, and all things associated with my psychiatric illness from time to time, but I maintain a healthy relationship with my psychiatrist and his nurse practitioners. I see them once a month, and I am not ashamed of that one bit. It is what keeps me going and able to function, and not take a whole pile of medications. I also have Diabetes, Hypothyroidism, a Pituitary Tumor, and of course Primary Sjogren's Syndrome. There is no cure for Depression, but once you are on meds and feel better you HAVE to keep taking them. They are what makes you feel better, so you can't stop.
Posted @ Friday, June 21, 2013 1:35 PM by Geri
I have a Sjogren's Blog where you ALL can come and vent. Please sign up to follow it, and we can develop a great community of support there. I need it as much as you do. It is terrible to look normal on the outside, but be oh so abnormal on the inside. http://sjogrenssucks.blogspot.com/
Posted @ Friday, June 21, 2013 1:41 PM by Ger
Hi everyone 
Sounds like we are all in this together. Recently lost my job due the slow and insidiuous progression of Sjogren's, depression being a part of it. My employers did not offer a medical leave as they only see the decline. My family also does not seem to understand. So now I am not sure what to do. Do I look for another job? Do I go on disability? round and round my thoughts go...
Posted @ Friday, June 21, 2013 1:48 PM by GINNY C
Hi Everyone, 
Reading all your comments..I have to say, I'm very proud of us first of all. But I've had Major Depression and Bipolar for I think the bulk of my life (I'm 48) and "coincidentially" been sick most of my adult life ~ not just Sjogrens. I had a great career (for me) and now on disability. Of course, family is clueless and apathetic. My PERSONAL cure is to actually detox off any and everything that is negative, which is what we must do for ourselves. It will fuel the depression and drain the immune system. Just what works for me. (( Love, Sandi ))
Posted @ Friday, June 21, 2013 2:43 PM by Sandi Jakeman
The few people that have ever heard of SS think it is all about dry eyes and dry mouth. Those were the LAST symptoms that turned up in my case. After being treated for five years my rheumatologist decided that my crippling joint issues, chronic fatigue, and depression were not from SS but from something else, and the symptoms weren't bad enough for her to support my application for disability. My loss of balance and frequent falls were blamed on stress. I recently found another rheumatologist who seems to understand how much depression has to do with the course of SS,and how SS can be a cause of depression. And whether some of the symptoms are from SS or some other connective tissue syndrome, she recognizes that I am the only one who knows the level of my pain. Physicians would benefit from taking courses that emphasize compassion and patient support. It is difficult enough to deal with the roller coaster ride that is SS. Having a physician that minimizes the symptoms and just plays the medication game only adds to the agony and depression.
Posted @ Friday, June 21, 2013 2:56 PM by Lynn
Reading everyone's posts is like reading about my life. How can you not be depressed when family and friends just don't understand that you aren't just being lazy or a complainer. I have been labelled as both. I just recently quit my job because I could not cope with the stress it put on me. Does fatigue cause an inability to deal with stress or is it depression that does it? I did not plan to quit my job it just happened as if something inside of me said I had to do it. I feel much better being at home but at the same time I feel less productive. Will this only add to the stress since once again it is seen as laziness? Only time will tell.
Posted @ Friday, June 21, 2013 2:56 PM by Wendy H
My only hope now is trying to do what I can to follow a four step plan from a book I purchased. It is called "The Immune Therapy Plan" by Dr. Susan Blum, M.D. M.P.H. I think it is a very good book, well written and worth reading. She mainly deals with food, toxins, supplements, excercise and stress to help with all autoimmune diseases. She mentions SS as one of the main debilitating conditions. I am going to try to follow as much of the plan as I can. I have been tested and have intolerence to gluten, wheat, dairy and egg whites. I have been gluten free for a month now and digestion seems better. Have cut down on dairy and sugar and will try to gradually get off those, also. I am at the point that I will try anything that may help. Rheumatologist wants to put me on Methotrexate and I don't want to. Now I'm on Neurontin and it makes me nervous and legs and feet are swelling. MRI of head made my hearing worse.
Posted @ Friday, June 21, 2013 3:31 PM by Barb
Seems our world is conditioned to criticize anyone who has or does anything different. Workplaces are geared to weeding out the less productive, illness is often said to be all in our heads. It is hard to be sick in that environment. It contributes greatly to the depression and difficulty adjusting to why we can't do what we used to do.  
Depression runs in my family, but I did notice that I had anxiety and fearfulness that I had not had before. Cymbalta helps with that some and the pain some but I have had to develop other methods of dealing with it all. One is reading on the forums and knowing that I am not alone! Thanks SjS communities and contributers!
Posted @ Friday, June 21, 2013 3:32 PM by Lynn
Hi, I'm a guy who was diagnosed with SS two years ago. 
I'm being treated for depression as well. My osteoarthritis is painful. I get cortisone shot every few months as well as cortizone shots in my thumb joints, 
I'm now being treated for that overwhelming need to sleep. I'm fortunate to have a supportive and loving family. SS is something that I can have some control over, a great sense of humor helps tremendously. I hope all of you that are in pain find some tranquility.
Posted @ Friday, June 21, 2013 3:36 PM by Andrew Rossi
I have to agree with Wendy H. Everyone seems to be telling about my life. I worked really hard at an accounting job for 20 years and ended up being let go because I came down with fibromyalgia and had serious difficulties doing my job. Unfortunately, couldn't be too bad because was turned down for disability. I eventually found a part-time job as a church secretary and have been doing that off and on over the last few years. I was doing hair and nails at home part time too but that wasn't consistant enough to pay the bills so back to work I go. I constantly struggle with the fatique and this year really have had a hard time with the depression. I'm on Prozac again as my insurance thru the state will not pay for Cymbalta (which really worked on the pain). I hurt constantly, I have good days more now, but still have bad bouts, especially with my hormone fluctuations. I wish I could get rid of that situation, but dr's not ready for that. My daughters and my husband for the most part are patient and understanding tho I wish they would be more willing to help somedays so I don't have to do so much. Most friends and family don't understand the illnesses I suffer from and cannot see why I don't want to get out of bed. I worry each day about my job because I cannot seem to get to work on time and it is taking a toll on my position. I fear that they will find someone who can do better and then off I go again. I love to do the work, just getting there everyday is the struggle. Some days, I wish that I had a table/bed to lie on and work. Ha Ha! Wouldn't that look good!? How do we get through this? I suffer from spinal arthritis, peripheral neuropathy, diabetes II, fibromyalgia, SS, depression and so on....I hope that we all can find some answers and some kind of relief to all this madness! Take care!
Posted @ Friday, June 21, 2013 5:23 PM by Jane
Wow you are all describing how I feel. I have terrible mood swings, and horrible anxiety that can get so bad. I still work but have applied for FMLA and ADA for some accomodations. If you are still working you should all do the same, it is your right and the law. I will say it is harder and harder to get to work with the fatigue, pain, and depression, but I do push myself. I get really depressed because I cannot exercise the way I used to anymore. Exercise was a big part of my life and love and now I am happy if I can ride my bike for 20 minutes or walk. I try to keep positive and believe I will overcome this illness but somedays I just want to dig a hole and jump in. I am also gluten free, eat organic foods and cannot take most meds either. Hang in there fellow Sjogren's sufferers....and definitely most people really don't get it. Take care.
Posted @ Friday, June 21, 2013 5:27 PM by Mary DeBruycker
Depression affects us all differently. It is a fact of life for everyone...at one time or another we have all suffered, to various degrees. I was constantly "offered" antidepressants, my symptoms ignored, etc. And glad I always refused. 
Yes periods of depression have come and gone since diagnosis. But I have refused any further offers...They (antidepressants) will only further aggravate the dry mouth syndrome we experience. I worked as a nurse for many years and saw so many folks use antidepressants and for most, it did not help the situation.  
With this disease, like any chronic anything, depression is a part of it. But with this disease, it is like adding fuel to the fire(symptoms of and results of dry mouth).  
The anxiety can be treated a low dose of Xanax, as needed in addition to mindful techniques. Alot of herbs work well for anxiety also.....there are other options. 
Good luck to everyone. 
Posted @ Friday, June 21, 2013 5:58 PM by Pat
Hi all. Barbara Greenlund was wanting a success story. Mine is of partial success. I'm 43 & was diagnosed 3 years ago. I have many of the SS symptoms ie fatigue, peripheral neuropathy, severe sleeps problems, etc, etc. For the first year after being diagnosed life was a living hell - I wished I wasn't alive. Most meds I had caused bad side effects - nothing seemed to help! But slowly, & I mean slowly, by researching & trialling natural meds (eg flaxseed, anti-oxidents, supergreens, etc) I have finally found a combination that has given me my life back. And because of this, I am now on only 1 prescription med!! Most days I feel 95% better that I did even a year ago! Don't get me wrong, I still have some bad days & have plenty of physical limitations but I just don't push myself. I have gone from every day being hell to approximately only 1 day a fornight being hell!! Please don't give up, do plenty of research, try to be positive & just take one day at a time, & you will slowly see some small results. :)
Posted @ Friday, June 21, 2013 6:08 PM by Cheryl Stevens
I get depressed reading about depression! I have such a conglomerate of diseases that really gets me down. Sjogren's, Bipolar disorder, osteoarthritis (L knee hurts so much I can barely walk my dog, and I live in an apartment.) 
High cholesterol,hypothyroid,asthma, and I'm probably leaving something out. Oh, the obesity which did not go away when I got a lap band. (My fault, didn't eat like I should, but some of my meds make me gain weight.) 
 
I am okay with the dry mouth. Pilocarpine 7.5 mg 2-4 times a day helps a lot. After 4 surgeries on my tear ducts, I am better and only have to use drops a couple of times a day. The foot neuropathy is much better with the gabapentin (which also helps my bipolar.) Some days I don't want to cope--seems unfair. I'm only 61. And some days I understand we all have stuff. I just found out that a family member who previously had prostate cancer now has developed COPD and an enlarged heart. He never smoked and neither did anyone in his house. He's my age. So I guess "It's always something," as RoseAnne Roseannadanna said. (And the actress Gilda Radner died at 43.) So I'm alive today and will try to think of something good.
Posted @ Friday, June 21, 2013 6:11 PM by Cecilia
It is ever present...no matter what I do to counteract it. Now that summer is here I am 75% less active than last: can't mow my yard anymore, and other things. I wonder if you could add to this topic by discussing any link between NEUROLOGICAL reasons and links to Sjogren's. I wonder if my depressive symptoms might fall somewhat in this category. I no longer work. Left due to this illness and several complications of Sjogren's, 5 years prior to a full retirement benefits. I stayed working until I absolutely was ready to DROP. Depressed? HA! When doctors bring that up I nearly fall of the chair laughing...so what stares I get then!
Posted @ Friday, June 21, 2013 8:45 PM by MB Lowery
I have just about given up on medications, the only thing that helps with depression and anxiety is sertraline. My doctor says it has the least side effects and its not addicting. I have heartburn really bad and everything give it to me. I have recently moved to Gilbert, AZ and really need to find a doctor that knows about Sjogrens'. If there are any of you that know of someone in this area I would really appreciate it.
Posted @ Friday, June 21, 2013 9:27 PM by Mary
MB, there a definitely neurological links. You might ask your dr re: having a complete neurological work-up. I just did and was very happy to learn that nothing is wrong; all my cognitive issues are work/stress related. That being said, I have had chronic depression, including two acute spells, since around the time of my diagnosis 25 years ago. It is certainly related to my SS, but I may have had it my whole life. I'm lucky; I have been able to take meds and experience very few side effects. If you can get by without medications, great, but if they can improve quality of life, I certainly will continue to take them. I ran out of pain meds a few weeks ago and knew I couldn't live like that. 
 
Mary, I believe there is at least one SSF chapter in AZ. I would check with them for a doctor recommendation. Fellow members are the best resource, and many members seem to go to the same doctors due to word of mouth. In general, if there is a support group near any of you, please go to a meeting or at least call the contact person listed. You will be with the only people who can understand and know what you are going through, and you will learn so much from other members -- and they will learn from you. I had to give up leading a support group because of work, which took so much out of me I would completely collapse when I got home. Now I, too, can no longer work and have started that wonderful process of applying for disability. Planned to start really taking care of myself, but ended up going backwards, with two surgeries in one month. How is that for depressing?!? Anyway, when I start getting better and stronger -- and flares do eventually end, even if they last for months -- I do plan to start a support group again. 
 
Forgive me for writing a book. Because of my SS, I have had zero social life, other than my wonderful and helpful boyfriend,, who does the cooking, cleaning, and marketing, since I can't -- and even he has asked how I can be tired, since I'm not doing anything. So I'm pretty lonely and talk everyone's ear off when I get a chance. Those of you who take care of families deserve huge medals. I can't even imagine it. Thanks for listening/reading....
Posted @ Friday, June 21, 2013 10:49 PM by Dodi
Dodi,  
I hear you about the lack of a social life. Sjögren's doesn't just attack the moisture producing glands, it attacks relationships with friends and family, one's finances, one's home, one's car and anything else that requires maintenance. Still, it's nice to have a bit of community online :)
Posted @ Friday, June 21, 2013 11:22 PM by Mrs. Crary
As I read the various comments about Depression and Sjogren's I have to say I see my life in many of the posts. I am actually going to be evaluated next week for depression. I really didn't want to believe that I may be depressed. But how can one not be with the various debilitating symptoms Sjogren's can cause in our life. I don't want to complain, but in my disease, it has attacked other organs of my body; kidneys, heart and lungs. I suffer daily and do my best to remain positive. I have lost everything, financially and materialistically as I am no longer able to work. But this past April, complications with my lungs and pneumonia almost took my life. Yes, Sjogren's can be a serious disease, I only wish I had been diagnosed earlier before the damage was systemically. What I want to share in a positive light, is that I have learned to live only in the present and moment, it makes it easier to deal with the symptoms. I appreciate that I wake on a daily basis and have learned that nothing else matters....life is to precious and one must appreciate everyday we are given. I have faith that I can survive this and also know that none of us are promised tomorrow. It has been a tough journey, but I thank the foundation for having a support system for Sjogren's patients. I know that I am not alone and Understand everyone's pain. I hope through SSF research there will be cure for Sjogren's in the near future. Yolanda
Posted @ Saturday, June 22, 2013 12:10 AM by Yolanda
Hi again. This is in regard to what Cheryl Stevens said. 
I am with you 100% on that and that is the road I shall be taking. It is a slow road, but isn't everything? The plaquinil I took for 12 days killed my already severely damaged GI tract and set me back to the point of sipping water and eating teaspoons of food at a time. Still inducing pain. What the Heck?  
So, build up the GI tract with double probiotics. Go organic and slowly introduce greens. (s l o w l y). And roll with the hourly changes, as I've been doing for the past 10 yrs. WE CAN DO THIS!!! Lots of love and (( hugs ))
Posted @ Saturday, June 22, 2013 1:21 AM by Sandi
Thanks everyone for sharing. I am having so much brain fog that if I do not get an email I don't know where to go to check on SS and all the evils that seem to go along with it. If there is an easier way to get to a blog an interact with someone, please advise. 
 
Thanks. Sue from Central Jersey
Posted @ Saturday, June 22, 2013 7:09 AM by
I never read blogs before I was diagnosed with Sjogrens, lol. Now, I read these comments because the people in my life just don't understand. How can you look fine and be sick? I don't answer anymore. I do have one close friend who has been living with an autoimmune disease for 20 years, and she is my lifeline. I did something extremely foolish last month. My 14 year old son had a tonsillectomy. Very painful if you know anything about this surgery or have had it done. Well, I'm a nurse, or was for 29 years, so I can take care of him. My wonderful ( and wise) mother in law offered to come stay and help me. I graciously declined. I can handle this. DUMB. I think I was on some kind of autopilot for 9 days. I just ignored me and took care of my son. Two days later I crashed. Could not get out of bed for 4 days. So, Sjogrens friends, let my experience be a lesson. When someone offers to help, say YES, THANK YOU!!! :). I hear all of you, this disease has flipped my life upside down. I am so sick of going to doctors. After 4 positive serology tests for Sjogrens, I now have to have a biopsy of my lower gums. Not looking foward to that. But, there are some really good days, playing with my grandchildren, gardening, reading in bed when I'm having a bad day helps. Anything but just laying there thinking unhealthy thoughts. If you aren't already juicing, please consider it. There are many things we can do for ourselves. Lose weight, I did and it helped. Try beginners yoga if you can. I was a runner in my previous life, lol. Read and educate yourself about autoimmune diseases. Baby steps when needed. Treat yourself good, and reach out to people who will at least try to understand. This is a great place for that. I pray for all of us, especially the folks who are alone in this. Sue
Posted @ Saturday, June 22, 2013 8:02 AM by Sue
Wow. These posts have been me for the past 24 years! Currently having high ANA levels but SSa & SSb are negative. Scheduled for lip biopsy and other tests in a few weeks. Depression has been lurking in me for all these years and try to manage without medications because drugs seem to reek havoc on my body. Anxiety - hard to control sometimes but as long as my diet stays healthy it's manageable. It's the socialization (or should I say lack of) that gets me down but socialization always seems to revolve around eating, drinking or exercise... none of which I can do in excess without suffering for it later. I too, had a professional career... left to work part time and after 14 years thought I could handle full time work... then menopause hit and everything started spinning out of control. I too, recently quit my job, and it has done a number on my self esteem. I feel inadequate, especially around successful family & friends. One family member recently said to me "what else do you have to do, you're home all day"... ouch those kinds of comments hurt, big time. And what adds fuel to the fire is when the doctors just want to medicate to control our symptoms... I feel like I'm living in the dark ages trying to cope with diabetes before the cause and treatment of it was discovered.  
Stay strong everyone, surround yourselves with positive things and people. Godspeed
Posted @ Saturday, June 22, 2013 12:13 PM by Candice
WOW!!! I read everyone's comments and it is like reading about my own life also. I too am a nurse... took great pride in my profession only to be beat up by my own! They too cannot understand! What is THAT they say? I remember the day I got my diagnosis thinking and feeling relief because all these symptoms finally had a NAME! I wasn't crazy after all... although people who know me would disagree..HEHE. A sense of humor is needed and positive thoughts too. We need a support group in this area too. You folks are my new friends! Thank you for your thoughts and input. I am going to now include my fellow Sjogren's friends in my daily prayers. It is a beautiful summer day here in W PA...the best thing for all of us is to: 
TAKE CARE OF YOURSELF FIRST!  
IF TIRED, REST, PACE ALL ACTIVITIES. 
DEPRESSED, TALK TO SOMEONE, WATCH FUNNY STUFF, BLOGGING AND HUGS HELP. 
CAN'T SLEEP... GET UP AND BLOG! OR REREAD OUR BLOG. YOU ARE NOT CRAZY! LOVE TO ALL AND HAVE A GREAT DAY! 
Ginny
Posted @ Sunday, June 23, 2013 9:49 AM by Ginny C
Those of you who have mentioned alternative treatments have given me some hope. I can't tolerate any drugs they've tried me on and now they are talking Methotrexate. I'm scared to death to go on that. I will try my best to follow the alternative route. Fortunately, I like almost any foods, especially veggies. It is so hard when your mind is so active and you want to do things you've always enjoyed and are able to do less and less. Luckily I was able to work in Human Resources at a wonderful company and I worked until full time until I was 68 1/2, then part time for another year. Could not do it now. Best of health to all of you.
Posted @ Sunday, June 23, 2013 1:51 PM by Barb
It was comforting to read other's comments since they reflected my own experiences. Fortunately my daughter is a lawyer and was able to get me on disability. I had been a teacher and school principal, but could not work any more at age 60. I had suffered with fatigue for years, but no one seemed to be able to help me calling it chronic fatigue. Finally after vision difficulties, the eye doctor suspected autoimmune issues and I tested positive for Sjogren's. The medical profession is woefully uninformed about Sjogren's. My biggest complaint is the debilitating fatigue. I see many specialists and dealing with the medical profession is also a pain, except for the few doctors who treat me with compassion. Meditation has been most helpful for giving me hope. I have been discovering an inner strength I didn't know I had. By not being able to do, I am learning how to be.
Posted @ Friday, June 28, 2013 9:38 PM by Darleen Z
It was comforting to read other's comments since they reflected my own experiences. Fortunately my daughter is a lawyer and was able to get me on disability. I had been a teacher and school principal, but could not work any more at age 60. I had suffered with fatigue for years, but no one seemed to be able to help me calling it chronic fatigue. Finally after vision difficulties, the eye doctor suspected autoimmune issues and I tested positive for Sjogren's. The medical profession is woefully uninformed about Sjogren's. My biggest complaint is the debilitating fatigue. I see many specialists and dealing with the medical profession is also a pain, except for the few doctors who treat me with compassion. Meditation has been most helpful for giving me hope. I have been discovering an inner strength I didn't know I had. By not being able to do, I am learning how to be.
Posted @ Friday, June 28, 2013 9:38 PM by Darleen Z
Hearing about people's chronic fatigue my doctor has me take 15 mg of amphetimine when I wake up and about 2 PM I repeat that dose followed by clonopin. 
Its working so very well Hope this info helps you folks
Posted @ Friday, June 28, 2013 10:45 PM by Andrew Rossi
I was just diagnosed with Sjogren's on January 9th, 2013. Both my daughter & step-daughter are nurses & have been a big help. I've already had heart surgery for SVT, the dry skin, dry mouth, dry eyes are beyond irritating. I hate to say I hurt all the time or am uncomfortable so I try not to say anything too much. This has lead to a terrible depression. I am absolutely sick of myself, sick of feeling sorry for myself, sick of hurting & at almost 51 years old wondering why I'm even here anymore:(
Posted @ Friday, July 19, 2013 10:34 AM by Patricia Broaddus
For Patricia -- Sad to say, I feel the same. My eyes hurt so much and I have trouble seeing due to the dryness, especially after cataract surgery. I also have a lot of pain; I keep telling myself I'll work on it so it either gets better or I can live with it or ignore it, but so far that hasn't worked. I am also totally sick of it and very depressed, especially with people telling me I shouldn't take pain medication (although not my doctors, thank God). Now I'm spending too much money trying to make my bed comfortable, because I know my bed is adding to the pain. Haven't found the answer yet. All we can do is try to hang in there for now; hopefully, we'll feel better, and depression does ebb and flow. It will get better eventually, even though it doesn't feel like it right now.
Posted @ Friday, July 19, 2013 11:32 AM by Dodi Palmer
I was just diagnosed with Sjogren's in April, 2013, although there was speculation for the past three years that it could be Sjogren's. It took me switching doctors to find someone to conduct the spit test and dry eye test. I was also referred to a Hematologist for low white blood cells and to rule out Lymphoma he ordered a CT scan of my head, neck and body. I didn't have Lymphoma, thank God. But it showed that I have a speckled pattern in my salivary glands that confirmed Sjogren's. Like so many of you who have posted I have stopped working because I couldn't cope like I used to and I've been suffering from depression and anxiety -- mostly anxiety because my Hematologist told me if I ever get sick I'm not like a normal person anymore, I have to go straight to the doctor or emergency room. He's an excellent doctor, but he scared the crap out of me! I went into a free-fall of losing weight and when my Rheumatologist wouldn't do anything about it, my primary care doctor prescribed Remeron for anxiety. He had to literally fight with me on the phone to take it because I was so scared to take anything. (I've had so many bad reactions to meds.) I reluctantly agreed to take the lowest dose 15 mg. per day and it's working really well. I have regained some of my weight back and am feeling much better. My problem now is that because I'm doing so well my Rheumatologist doesn't want me to come back anymore. He actually said to me that maybe I didn't really have Sjogren's, maybe it was anxiety all along. I was bewildered! I pointed out all the test results and the CT scan, but he still doesn't want me to come back. Is it just me -- aren't we supposed to be followed by a rheumatologist indefinitely?
Posted @ Monday, July 22, 2013 1:04 PM by Laura Crable
Laura -- You need to find a new rheumatologist -- seriously! Sounds like, at the very least, horrible bedside manner and, perhaps, not a very good doctor. As for what the hematologist told you about getting sick, it's not necessarily true that you will get terribly ill if you get anything. Some people do, yes, but a lot of people don't. There is a lot of misinformation out there, even among doctors, and a lot of it seems to be very scary stuff.
Posted @ Monday, July 22, 2013 1:35 PM by Dodi Palmer
I now realize I have had it a long time. Cataract surgery really did me in tho. My eyes feel like torment every waking hour. Please seek advice before having cat sur. I am soo much worse. Can't eat. Everything too sour,spicey, salty. Weak and fatigue all the time. I'm hoping to go to the spec. dr. at Vanderbilt sometime. Drs. just don't get it at all. Anyone with sjogrens that wants to correspond, email me at eleanordoub@bellsouth.net No one understands why I had just as soon stay home where I can lie down and close my eyes. Who wouldn't be depressed..You get sick and then depressed. Good Luck to All...I understand what you are going through . Hope to hear success stories and the drs name that helped them or natural things.  
Posted @ Saturday, July 27, 2013 5:38 PM by Eleanor Doub
I have been dealing with sjogrens for the last 7 years (probably longer). Since Dec. 2011 I have had to quite my job as a nurse, drop out of school (working on getting my BSN)and basically have become a hermit. Since 12/11 I have suffered from severe migraines, vertigo, nausea and vomiting. My brain is like mush. I have had severe abdominal pain, most recently had an attack of acute pancreatitis which the Drs. at the hospital refused to listen to myself or my husband and declared that I am an alcoholic! Funny thing is I don't even drink! It makes me so angry that people assume you are something you are not. Although this year has been the most challenging ever I have learned to deal with each day and whatever it may bring. I totally understand what it is like to be so tired you don't even leave your house. I went from a very energetic person to someone even I don't want to be around. I have had to fight hard to find good Drs. who DO know about this disease and have met many who never would connect any of the dots. The most important thing for me has been to learn to be my own advocate. I just started using a new dietary supplement program because eating is so hard sometimes. I want "a" life back!I will never give up and was wondering if any of you have had the same illnesses associated to mine? In March 2013 I had a right parathyroid tumor removed. I see a cognitive therapist and psychologist every week. I really at meals anymore because I can't always follow the conversation. Please let me know if there are others with strange medical problems.
Posted @ Thursday, August 08, 2013 7:38 AM by Teresa Vitale
It was in July that I last posted a comment.I too feel that I had this for a long time. It is now Oct. Much worse, think fibromyalgia is rearing it's head. Feel so tired and hurt to the point I still haven't gone to rheumatologist. Eyes getting worse. Your sharing is making me feel that there are people going thru what I am. Just need someone to talk to as my family doesn't understand. Thanks everyone for sharing, it really means a lot. If you haven't had cataract surgery, DON'T..eye dr. said wait until you are really having trouble seeing. It really messed me up. Eleanor 
Posted @ Monday, October 21, 2013 11:18 PM by Eleanor Doub
I feel like you are speaking my life. I sometimes dream of Dr Kevorkian being alive and in practice. I really wish to be put out of my misery. No one can see your pain, so they don't get it.  
I am so sick of being sick.  
I don't do anything but go to the doctor and the dentist. I have had 15 root canals in 3 years. That isn't including the teeth that had to be pulled and filled and bonded. It never ends. I am alone. I have no friends. My family doesn't even acknowledge it. My 87 year old mother is the only person that tries to help. My son has moved back in with me, but I don't think he really understands it either. He tries but he's at work most of the time. 
God, I pray for help for everyone suffering this awful disease. Thank you for your stories. June
Posted @ Monday, November 04, 2013 2:18 PM by June Tousignant
I was diagnosed with SS 3 years ago. I am currently on FMLA and have a strong suspicion I won't be able to return on Feb. I am so tired all the time and I can't sleep. Unlike others with this disease who lose weight I seem to gain weight no matter what I do. I have periodic brain fogs, depression and anxiety attacks. It sucks! I understand when everyone says they are tired of being sick. I am tired of people looking at me like I am crazy when I tell them that my SS is causing these issues. Most Drs. Don't believe these issues are part of SS. They should listen to those of us who have SS. Hang in there everyone. I just take it one day at a time. Some days are good and some are not.
Posted @ Tuesday, December 10, 2013 12:18 AM by Brenda
I have been sitting here reading for approx 2 hours. It feels so good to hear people say the things that I feel everyday of my life!!! I am so sick of people,especially my family,acting like I am making all of these problems up.WHY would anyone choose to feel this way!!! My alcoholic brother, in a moment of anger, called me a psychotic hypochondriac b#%@!* !!! My other brother will ask " Now wat is that disease or watever you think you have??? These comments hurt so so bad.I have always been the one that does everything for everyone. Now, I am no longer able to do this. NO ONE understands because "I don't look sick". Those famous hurtful words!!! I am now beginning to look sick. My teeth are actually falling out of my gums....crumbling and decaying.I have lost over 40 lbs over the last year.I am ok with that, but now I am eating things that I don't have to chew. Appt with oral surgeon next week to discuss and get a game plan for my oral care for the remainder of my life. Fatigue is a huge problem. FATIGUE, not LAZINESS.It feels as though someone has hooked a vacuum cleaner to me and sucked the life out of me. The pain, horrible. My hips feel like they are gonna pop out. My buttocks and lower back hurt constantly.Memory, HA! I can remember things from years ago, but not 10 minutes ago.Sleep? can't sleep at "normal" sleeping hrs, but can sleep for 2-3 days without getting up to go to the bathroom or drink or eat. It is as if I go into a coma.I would never leave the house if I did not have to. I am a nurse and I work 3 days a week. Nursing is the only joy in my life, but it kicks my tail!!! I have been so depressed and my flare ups have been constant. I understand why no one wants to be around me. I want to feel good and get rid of all the negative in my life. That has to begin with ME, but is so hard when I feel so tired, weak,in pain and dealing with family members who think this is "ALL IN MY HEAD"! They say I am not the same person I used to be...... well guess what.... I AM NOT THE SAME! I am dealing with so much, and dealing alone.I have been printing the blogs I have been reading and am going to make a notebook for family to read.I printed "The Spoon Theory" last weak and have been sharing it.If you have not read it, go to website...butyoudontlooksick.com and read. You may also want to print and share with the ones in your life that do not GET IT.I will share more another time, cause my journey with autoimmune issues is full of info that I know a lot of you can relate to and I know how good it feels to hear someone say they have also experienced the same crazy things. We just have to keep on keeping on!!! God Bless!..... Lisa
Posted @ Thursday, December 12, 2013 7:04 PM by Lisa
Where are the current comment? I read through July 2013. I wrote a comment yesterday, but have not found it or any responses. I'm hoping for miracles from each other, but the remarks are 6 months behind.
Posted @ Friday, January 31, 2014 2:53 PM by Susan Ruff
Hi folks. I wrote a note back in June 21, 2013. Since I've written, I have been having serious neuromuscular issues. My neuromuscular doctor has given me a working diagnosis of a new autoimmune disease called Myasthenia Gravis. I have developed Right sided weakness and use a cane to walk. My respiratory muscles weakened to the point of having 3 hospital stays in the month of January. The last was just a week ago. So the medication I take Mestinon 60 mg every 6 hrs. The biggest side effect is excessive salivation. Well that was an understatement. This drug that treats myasthenia gravis helps me with the Sjogrens. I have depression. My therapist one day asked me how long did I think I have been depressed? I thought carefully and said "All my life" He said he thought so too. I have gone through PTSD therapy as part of a study at a local University. I swear it has put me in control of my depression. I recognize when my depression worsens I go back to my therapist. My Psychiatrist practices SomaPsychiatry so he can work with my medical issues with the mental health issues. He review my medications and he's a saint. This new autoimmune disease kicks it over Sjogrens, which I thought was bad. The Myasthenia Gravis, affects my speech. I go from sounding like Fran Dreisher ( The Nanny) and have developed a very soft voice too. My neck muscles are weakened as are the muscles more so in my right leg and arm. The worst thing is I have a muscle wasting component where the docs are all perplexed with me. I have a great team of doctors at Case Medical Center in Cleveland Ohio. ( I moved here from Boston for the care) I have six specialists. As I have Meniere's Disease and have had a cochlear implant. I have gone to the pain center and have had all the nerve endings in my spine, radio frequencies which has taken ALL my back pain away. I'm taking perhaps one percocet a day. I have been keeping a positive attitude and people ask me why I'm so upbeat, I tell them that I have to live with this pain the butt diseases for the rest of my life, I'm not letting them call the shots. I have a day here or there where I say why bother anymore. Those are getting further apart. I guess what I want to say is that we can overcome these obstacles. If you don't have a supportive family or friends, then by all means get to a support group if you can.. they are a life saver and they listen!! I hope anyone who would like to touch base with me will do so! We all share this damned disease lets own it and not let it own us.  
 
Andrew
Posted @ Saturday, February 01, 2014 12:35 AM by Andrew Rossi
Once you have a diagnosis, the world changes around you. I told a hand full of trusted friends, aside from family of course. HIPPA is one of the most absurd "laws" there is....so difficult to prove, yet felt in every aspect. Shame on healthcare workers (clerical included) who are gossipers.....my hope, is what goes around comes around, triple fold. It has been more damaging than the impact of the illness on my body, took so long to be diagnosed, took bcell lymphoma and my request for a lymph biopsy to get to the bottom of all my symptoms. I could keep writing but won't bore you all. Just one more thing....always obtain your physicians notes....see who is functioning and or on the same page as you. If it doesn't, move on quickly. My life would very different now.
Posted @ Saturday, February 01, 2014 5:27 AM by Pat G.
Good afternoon everyone! 
 
Just wanted to share some tidbits that have helped me with my Sjogrens. The first is the fatigue. I went to a sleep pulmonary doc. He diagnosed my excessive need to go to sleep as a form of Narcolepsy. I am now taking Adderall One tab when I wake and the second is 4 hours later. OMG its turned my life around. It does make one a chatterbox and that is something I'm trying to control. Now dietary, I'm in a muscle wasting mode and my diet is eat as many calories high in fat and sugar, essentially. The docs meanwhile try to figure out the reasoning of the weight loss.  
 
Now I am in a conundrum where I cannot figure out if symptoms I get are Sjogrens based or Myesthania Gravis based. That will be a challenge.  
 
Oh one last thought. I have developed moderate to severe osteoarthritis mostly in my hands. In November I had my right thumb base rebuilt using a tendon in my arm. Its amazing what they do~ At the end of this month I'm to have the other thumb base done. The cortisone shots stopped helping that thumb pain. I feel like the bionic man. I've had over 25 surgeries.  
 
I also deal with COPD. When I get to an ER they never know whether to put me under pulmonology or neurology. I find Emergency Rooms quite comical after the many visits. I watch and observe everyone that has direct and indirect care for me. Nothing happens unless I'm told what it is they're doing and why. Being an old control freak, I feel like I have my mojo back when I can in situations like this.  
 
I guess I would offer this advice as a retired RN and as a patient. Never ever let a doctor get away with anything. They are accountable to YOU! If you don't like something they think you need, ask for another opinion. If they change your meds all around ask why and then call your Primary Doc and tell him what they're doing. Eventually they'll learn we're not just a hunk a meat or a medical record number without the need to be civil to us; It doesn't fly with me nor will it ever. Doctors are human and they make mistakes and they have personalities that can suck or be most compassionate. It takes good observation skills.  
 
Wishing everyone good health.! You're token Sjogrens guy, Andrew
Posted @ Saturday, February 01, 2014 12:52 PM by Andrew Michael Rossi
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